Raising a Child with a Disability
Anil and Reshma plan a trip to Barcelona.
They do the usual: learn a little bit of the language, find out
what sights they should visit and learn about the different eating
habits. They are obviously very excited about their trip but a little
anxious as well. Will they be able to manage in this foreign land?
They board the plane with some apprehension, but are clearly excited.
The flight is uneventful, and they land safely. All is well, until
the captain announces overhead, “Welcome to Cairo, Egypt.”
Anil and Reshma panic. They did not notice they got on the wrong
plane and neither did the airline hostess. What do they do now?
They know nothing about Egypt. The language is different, the food
is different and they have no idea which sights to visit. How will
they manage?
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Anil and Reshma’s
journey is similar to that of parents who have a child with a disability.
Parents spend nine months waiting with anticipation, learning all
they can, planning the upcoming months and even sometimes planning
out their children’s careers. Upon delivery of their child,
however, they are informed their child has been born with a disability.
New questions arise. What is this disability? What types of issues
will our young child face? How will this disability affect our child
as he or she grows up? How will we be able to help our child? Why
did this happen?
Raising a child with a disability can bring about
tremendous stress to parents, family members and friends. So how
do parents cope?
1. Educate yourselves regarding your child’s
disability and the needs that may arise. Ask questions, read as
much information as you can and contact local and national support
groups. These support groups can provide you with guidance about
tests that may be necessary, specialists who can be found in your
area, how the disability will progress as your child grows older
and some of the issues to consider as your child enters early childhood,
adolescence and adulthood. These support groups have already done
the homework, so use their resources. Learn as much as you can.
If you know what to expect, you can be prepared.
2. You are your child’s advocate. Learn
to request—no, demand—appropriate and necessary medical
tests and special services for your child. Your medical and rehabilitation
team may find your persistence a bit exasperating, but you are looking
out for your child’s interests.
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3. In the past, South Asians have
often kept illnesses or disabilities from their family. Use the
strength of your family and friends. If your extended family is
aware of your child’s special needs, they can provide help,
giving you some respite.
4. Many states provide early intervention assessments
if a child is suspected of having a delay, such as gross motor delays
(large muscle movements—walking), fine motor delays (small
muscle movement—writing) or cognitive delays. These delays
may be detected by a child’s pediatrician, day-care provider,
family member or friend. If you suspect a delay in your child’s
development, you may self-refer your child to receive these assessments.
The assessments may be provided through your state’s health
or education department. These assessments for infants and toddlers
are provided as part of the Americans with Disabilities Act.
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5. As your child gets older, he or she will be required
to enroll in school as would any other child. The Individuals with Disabilities
Education Act stipulates that all children with special needs must receive
rehabilitation and special needs services to achieve their educational
goals. These services are mandatory and will be provided through your
school. A team consisting of a special education teacher, specialized
services (physical, occupational, speech or vision therapy) and you, the
parent will develop an Individualized Education Plan (IEP) to provide
the best education for your child. As the parent, you will get to approve
or request changes to the plan. These services begin early, before preschool
age, extending into elementary and high school and sometimes up to 21
years of age depending on the state.
6. Be aware of special equipment needs, such as adaptive
chairs, foot braces, hand splints, assistive technology or other adaptive
equipment. Talk to your medical providers for this information. Sometimes,
such equipment can be obtained for free or at a reduced cost through local
and national organizations, such as Easter Seals and March of Dimes. Free
or reduced-cost equipment is given to people based on their financial
need.
7. Maintain a comprehensive folder of your child’s medical records,
including all services, tests and assessments completed. Write questions
as they arise in your mind. Do not rely on your memory for meetings with
your medical practitioners, as you may forget to ask some important questions.
When your child begins school, maintain a separate comprehensive folder
including all services your child may receive. Maintain a notebook with
questions and comments for your child’s service providers. Also,
be sure to send this notebook to school on a daily basis so that teachers
and service providers can answer any questions or comments you may have,
thus ensuring daily communication.
8. Lastly, take pleasure in your child. Give your child unconditional
love and he or she will flourish in that love.
Minal Jain, PT, DSc, PCS, is a pediatric clinical
physical therapist. She has over 20 years of experience working with children
and families with disabilities. Dr. Jain is currently a senior physical
therapist involved in pediatric clinical rehabilitation research at the
National Institute of Health (NIH) in Bethesda, MD. She can be reached at
minaljain@gmail.com.
The views expressed are those of the author
and do not reflect endorsement by the NIH.
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